Wednesday, May 6, 2009

Consequences and Ethical Dilemmas in the Tuskegee Syphilis Study

Since I don't seem to post much on this website anymore, I decided that the one paper required out of me this semester should probably be posted. This is the paper that I chose to write for my Ethics in Engineering and Science course. Didn't think much about my choice, until I started to research more into the topic. There was some upsetting information to be found. It's sad to hear that just under 50% of the population knows about this incident.

Not that you'll learn much from my paper, but at least it makes for a little more literature on the Tuskegee syphilis study to float around on the internet. Here's the paper:

The Tuskegee Syphilis Study has reached a level of infamy equivalent to such disasters as the experiments done by the Nazis during the Holocaust or the atomic bombings of Japan. With many innocent and ill-informed subjects hurt, there have been many distortions to fact and fiction. Ranging from the horrific truth that the subjects involved in the experiment were called cadavers to the equally terrifying lie that the men were injected intravenously with syphilis, sifting through the information to form knowledgeable conclusions has proven to be quite the task. The unfortunate truth is that this event happened thus it is necessary to evaluate the study’s processes and results to best learn from its compromise of human rights.

In 1932 when the forty year study was started, the United States Public Health Service claimed syphilis was prevalent in more than 30% of African-Americans. This astonishing statistic was countered with the proposal to study untreated syphilis and the Tuskegee Institute agreed to partner with the research. Tuskegee, Alabama, was chosen as the location for the study. The subjects were found through a broad testing of the poor African-American communities in Tuskegee. The men who fit the criteria for the study were told they could receive free treatment for “bad blood,” a common nickname for syphilis.

Roughly six hundred African-American men participated in the study – 399 with a later stage of syphilis and 201 uninfected men were used for a control group. Allan Brandt explains:

Vonderlehr [the doctor performing the Wasserman tests] found that only the offer of treatment elicited the cooperation of the men. They were told they were ill and were promised free care. Offered therapy, they became willing subjects. The USPHS [United States Public Health Services] did not tell the men that they were participants in an experiment; on the contrary, the subjects believed they were being treated for ‘bad blood.’ (Reverby 21-22)

This deception was only the beginning of a morally questionable scientific study. As stated in the introduction to her book Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study Reverby states, “The Tuskegee Study could be seen as just one of many violations of basic moral codes when science goes ‘bad’.” (Reverby 2)

The studies performed on the men consisted of multiple examinations and a spinal tap to test for neurosyphilis. In order to deceive the subjects into thinking that they were receiving treatment, non-effective drugs were handed out to the men instead of giving them the proper care for their syphilis. This study of the untreated syphilis continued for 40 years until Peter Buxtun, a Public Health Service’s venereal disease interviewer and investigator, leaked the study to the Associated Press. The story’s publication led to a public outcry which finally put the study to rest and gave the still-living infected proper treatment.

It is important to note that the Tuskegee syphilis study was ended through an act of whistle-blowing. It was not until Peter Buxtun went outside of the Public Health Services that the study was suspended. Whistle-blowing is a delicate procedure. To go outside of the proper protocol to expose your associates’ errors requires careful steps. Buxtun twice expressed his concerns about the Tuskegee syphilis study to the Centers for Disease Control in hopes that the study could be ended through those in the medical field. After a couple years of being ignored, he finally decided the only way to properly right this horrible study was to disclose information to the Associated Press, who later published the story. While many whistleblowers suffer consequences for their actions, Buxtun actually was well received by the public and praised for his moral ethics.

After much scrutiny and review, the Tuskegee Syphilis Study has produced many compromises on the ethics practiced during the research. While these technicalities have been altered in the Medical Code of Ethics to eradicate the same abuse in future research, it is still important to study and learn from this previous failure to recognize the value of human rights.

The study provides several ethical disregards. Most notable is the deception of the participating men. They were told treatments were to be given to help cure their syphilis when there was never any intention by the governing doctors to treat the disease. In a letter from Dr. O.C. Wegner, chief of a venereal disease clinic, to Dr. Vonderlehr, Wegner states, “we have no further interest in these patients until they die” (Reverby 23). One of the few ways this irreverent approach to human life could possibly be argued ethically is through utilitarianism. The thought of being able to benefit the rest of the African-American community and scientific world could ethically justify such a deceptive act; but can one truly justify such an act morally?

Until 1947, there was no successful treatment found to work on the syphilis-infected African-Americans. This is largely why the study was started, but in 1947 a new drug called penicillin was being used for syphilis treatment. Amazingly, penicillin was declined to all those partaking in the study. Syphilis had been observed for over fifteen years by this point and “25% of the syphilitic group and 14% of the controls of comparable ages had died” (Reverby 402). The need for a continuation of the study was unnecessary. Even an ethical approach of utilitarianism could not dismiss this act. In an effort to explain the attitude taken towards the ethical issues of the study:

A 1976 interview conducted by [Dr. James] Jones with Dr. John Heller, Director of Venereal Diseases at the PHS [Public Health Services] from 1943 to 1948, who stated, “The men’s status did not warrant ethical debate. They were subjects, not patients; clinical material, not sick people.” (Reverby 411)

This disregard for the human rights of the male subjects is astonishing. This statement alone shows the role racism played in the ethical approach to the study. In retrospect, Robert Cassell, a former medical director for the public health department in Bridgeport, Connecticut, states, “The goal of human experimentation must always be to advance the human condition, and to improve the lot of the subjects of the study. These are the sine qua non [(a condition) without which it could not be] of valid medical research.” (Reverby 5).

The scientific method taken in the study at Tuskegee should also be questioned. From the conception of the study, a proper methodology seemed to be ignored. The study was started with no hypothesis to be proven. Nothing was to be changed throughout the process. It was to strictly be an observation of syphilis in the African-Americans. Yearly examinations were to track the disease’s symptoms with a spinal tap to check for neurosyphilis. It wasn’t until necropsy that any valid information was gained and even still, the information just confirmed the previous known fact that syphilis can cause expedited mortality. A hypothesis must be set in order to have a proper scientific method.

When looking back at such heinous treatment of human lives, one cannot help but think of how things could have been approached differently. Obviously, the participants of the study should have known their symptoms and the purpose of the study before willingly partaking in it. By lying about the study, the doctors deceived the Tuskegee community and the men involved in the study. Also, there should have been proper treatment for symptoms instead of using placeboes especially when penicillin was found as a means for combating the syphilis disease.

While justification for such an event cannot be warranted, one can look optimistically at how a nation has learned. The event has sparked an informative response that has given “a metaphor for what happens when there is no informed consent, when medical paternalism and arrogance substitute for a consciousness about research ‘materials’ as human beings” (Reverby 4). Also, the study caused a chain reaction that influenced several changes in scientific protocol. “Institutional review boards (IRBS) … must examine most protocols that involve human subjects before research studies begin now exist, in part, because of the revulsion against what happened in Tuskegee” (Reverby 2).

While studying the Tuskegee syphilis study, one realizes that if an ethical approach had been taken towards the study then all of the issues would have been avoided. If ethics had been applied to the scientific method, knowledgeable consent would have been received from all participants, maximal treatment for all individuals in the study would have been supplied, there would have been a proper handling of information procured, and most importantly the Public Health Services would have avoided compromising their reputation. It has taken until 1997 for the government to issue a formal apology, nearly 25 years after the closure of the incident. How much longer must a nation wait until trust can be restored to those in power?

Tuskegee’s Truths was a collection of works that was composed by Susan Reverby. With the multiple articles and papers within the book, this was the most commonly quoted and referenced book.

White, Dr. Robert."Challenges in a Narrative About the Tuskegee Study of Untreated Syphilis."2008.WesleyanUniversity.4 May 2009.

This article was used in order to provide more information on the impact of the Tuskegee study. It was purely an informative resource.

Katz, Dr Ralph, et al ."The Legacy of the Tuskegee Syphilis Study: Assessing its Impact on Willingness to Participate in Biomedical Studies." Journal of Healthcare for the Poor and Underserved.2008.4 May 2009.

This article was used in order to provide more information on the impact of the Tuskegee study. It was purely an informative resource.

MedicineNet.com. 7 August 2004. MedicineNet. 4 May 2009 .

This website was used in order to learn a better understanding of the syphilis disease and the different stages it manifests.